August 26, 2024 • 34 mins
“I think the biggest thing emotionally is, you're valid. You are seen. You are going through what you are going through. If a doctor says otherwise, know that you are not alone in that. There's a community behind you.” - Briana Banos
In this extended episode, your hosts Dr George Moncrieff and Dr Roger Henderson will be discussing Topical Steroid Withdrawal (TSW), also known as Red Skin Syndrome. They’ll cover what Topical Steroid Withdrawal is, along with the symptoms and severity of this condition.
They are also joined by Briana Banos, an incredible filmmaker, who has Topical Steroid Withdrawal herself. Briana is now using her platform to advocate and raise awareness on this condition which has heavily impacted her life. She shares her powerful story and gives advice on how she has managed living with Topical Steroid Withdrawal whilst also sharing what more can be done to help those living with this long-term, devastating condition.
This raw and emotional episode is not one to be missed and acts as a reminder that you are not alone.
Useful resources and links:
ITSAN – www.itsan.org
Scratch That – https://scratchthat.org.uk
National Eczema Society - https://eczema.org/
‘Preventable: Protecting Our Largest Organ’ Documentary - watch here
Thank you to our kind sponsor AproDerm, who provide a range of emollients designed for the management of dry skin conditions, including eczema, psoriasis and ichthyosis.
Everyone’s skin is unique and what works for one person, may not work for another. That’s why AproDerm has developed the AproDerm Emollient Starter Pack. This pack contains all four of their emollients varying in their formulation, consistency and hydration, giving you the choice to find a routine that suits you.
Find out more here.
IG: https://www.instagram.com/aproderm/
FB: https://www.facebook.com/AproDerm
We hope you find this podcast interesting and helpful. Please leave us a review or email info@aproderm.com with any feedback on this episode or suggestions on dermatology topics that you would like to hear about in future podcasts.
The views expressed in this podcast are of Dr George Moncrieff and Dr Roger Henderson. Fontus Health has not influenced, participated, or been involved in the programme, materials, or delivery of educational content.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:07):
Hello, and welcome to this Skin Deeppodcast, where we look at skin-related
issues, conditions, and treatments inan interesting and informative way.
I'm Dr Roger Henderson.
I've been a doctor in the NHS foralmost 40 years and I've got a
long-standing interest in dermatology.
And I'm Dr George Moncrieff.
I was also a GP, although I'venow retired from my practice.
(00:29):
I'm a primary care advisor to the NationalEczema Society and the former Chair of
the Dermatology Council for England.
This is the second of two podcastswe're doing about topical steroids
and if you were with us for the first,we do hope you found it helpful.
But this time we're going to be looking atTopical Steroid Withdrawal and some of the
potential problems associated with this.
(00:51):
In addition, George and I are absolutelydelighted to be joined by our special
guest for this episode, Briana Banos.
Briana is an amazing individualwith an incredible journey involving
topical steroids and she'll help usunderstand the patient's perspective
of Topical Steroid Withdrawal.
(01:16):
Now I'm just wondering, George, somepeople listening will be thinking,
"well I've never heard of TopicalSteroid Withdrawal and this must be
something new", but I think we bothknow that it's far from new, isn't it?
Absolutely, it's not anew condition at all.
Although it does appear that we arerecognising Topical Steroid Withdrawal
Syndrome more frequently nowadays.
It was first discussed back in 1973,would you have it, that's 50 years ago.
(01:41):
Then in 1979, a couple of veryimpressive dermatologists coined
the term Topical Steroid Addictionfor the same thing really.
Typically patients with this conditionfind that their steroid treatment
starts to work less effectively.
Understandably, that initiallyencourages them to start using it more
or using a stronger topical steroid.
(02:03):
But things continue to deteriorate.
The topical steroid is exhibitingwhat doctors call tachyphylaxis.
This is where treatment starts towork less effectively and that's
a feature of true addiction.
And thinking about it starting, then,does it usually come on just when it's
stopped or can it develop, sort of,during treatment, between treatments,
(02:26):
or how long might people be using theirsteroids before this starts to develop?
It's hugely variable.
It's remarkably variable.
Sometimes, as you say, it startsafter years of successfully using a
topical steroid, and then suddenlythe patient runs into problems.
Other times, it can come on withinjust a couple of weeks of starting one.
(02:47):
But it's a very debilitating conditionand, as you say, it can come on between
treatments or even during treatment.
And to anyone thinking, "well, I'm,I'm probably the only person I know
that's suffering from this condition".
How common do we think it maybe out there in the real world?
Well you're almostcertainly not on your own.
(03:09):
Studies recently have confirmedthat it is hugely under-recognised
and have demonstrated thatit's pretty common really.
Affecting just over 10% ofpeople who use a topical steroid.
Admittedly that means that nearly90% of people using a topical
steroid have no problems, whatsoever,which is great news for them.
(03:32):
This is under-recognisedand underdiagnosed.
Yeah, it's a lot ofpeople potentially still.
I'm going to take a punt here andsuggest that when we start to drill
down into what's causing Topical SteroidWithdrawal actually in the skin, uh,
we like to think we know everything.
I suspect we know very little about this.
(03:52):
That is just a punt, but haveI gambled that one right?
You have indeed.
Yeah.
If only we knew what was going on.
In the last podcast, we describedhow topical steroids actually
weaken the skin barrier.
And it may be that people whoseskin barrier is more vulnerable,
are more vulnerable to getting this.
But furthermore, when we measurehow strong a topical steroid
(04:13):
is, we use a surrogate marker.
We measure how much it makes the skin gowhite by constricting the blood vessels.
The very small arteries areconstricted by topical steroids
and we use that as a marker.
How long it lasts and how severe it is.
As we all know, facial skinhas considerable capacity
to vary its blood supply.
(04:35):
For example, some people when they'restressed or emotionally upset, their face
goes red, [they] have a facial flush.
And that tendency to flushingand blushing is very individual.
And I just wonder, this hasn't beenconfirmed, but I just wonder whether
something similar might be going on here.
That a topical steroid for some reasonhas triggered some instability in the
(04:58):
normal control of the blood flow tothe skin on the face, for example,
or the skin wherever it occurs.
And that's what's going on here.
So what we see in the very early stages ofthis problem, the skin becomes bright red.
Looking and patients sayingfeeling like severe sunburn.
And this can be extremely unpleasantwith intractable itch and a burning
(05:22):
pain which can be so severe, that evenwashing with plain water is unbearable.
Can you imagine that?
The thought of applying a simplemoisturiser, an emollient, is
untenable for these individuals.
And this is called the Red Skin Syndrome.
The changes that you see in theskin can extend beyond the area
(05:45):
of skin that was previouslytreated with the topical steroid.
And these dilated bloodvessels, when you dilate a blood
vessel, it can become leaky.
Molecules escape into the tissuesand take with them some fluid.
So you get some swellingaround the ankles or the face.
If it affects the face, can become reallydisfigured from swelling around the eyes,
(06:05):
completely changing how somebody looks.
And with this all, thermoregulation, theability to keep your core temperature
right by controlling the blood flow tothe skin, for example, that goes AWOL.
And results in patients, withthis, feeling too cold or too hot
and being unable to control that.
Hardly surprisingly, sleepis disrupted dreadfully.
(06:28):
Many experience extreme fatigue,partly due to that disturbed sleep.
Hardly surprisingly again, they goon to get emotional fluctuations.
And when it's severe can go on todevelop severe depression and anxiety.
At this stage, Topical Steroid WithdrawalSyndrome can look a bit like eczema.
And it's easy to understand howso many physicians seeing this
(06:51):
come to the conclusion that theproblem is that the patient isn't
using enough topical steroid.
And if only they would listen toour advice and take more treatment,
their condition would get better.
But if this is what's goingon, that would be a disaster.
And as if that's not unpleasantenough, it then can progress on to
(07:12):
more severe patterns, with lumps inthe skin, massive flaking of the skin.
To give you some idea of how severethat is, it's often called, snowing.
It just describes how markedthat loss of skin can be.
They can develop deep, painful cracksin the skin, and dramatic crusting.
(07:33):
This is not infected eczema andantibiotics generally don't help here
and it's different from eczema relapses.
For a start, it involves a wider area ofskin than the area that was being treated.
I have seen cases where it'slooked far worse than the worst
cases of eczema I've ever seen.
And I almost hesitate to say thisbecause this is so unfortunate and
(07:56):
a little depressing if I'm honest.
I have no doubt that there will be manypeople with Topical Steroid Withdrawal,
who look like that [and] go alongto their healthcare professional.
Healthcare professional looks in thenotes, they have eczema, "ah, fine, let's
treat the eczema, let's hit it harder".
They double down on their steroids,and you are just hosing down
(08:18):
that fire with petrol and that'sa terrible thing to imagine.
I think that's one of the biggestproblems for patients with this.
Until recently our professionhas been remarkably reluctant
to acknowledge it even exists.
And as a result, it's not diagnosed.
In their book, it remains rarebecause it wasn't diagnosed.
(08:39):
It doesn't mean it wasn't there,but in their eyes, it doesn't exist.
So it's not taught.
I'm not sure about you, but Iwas never taught about this.
Even though it was described, 50years ago, and it's not considered
in the differential diagnosis.
So the cycle goes on and theproblem is repeatedly dismissed.
Can you imagine how grim it must be tohave an extremely painful, bright red
(09:02):
face that goes on to become cracked,crusty, swollen, and severely disfigured?
And to have doctors blame you forthe fact that you're not treating it
with what they're recommending, whichyou know is going to make it worse.
Yeah, I can't, and ina way I don't want to.
It's awful.
Does it have a predilection for anyparticular parts of the body, by the way?
(09:24):
Yes it does.
It usually involves the head andneck, or can involve the genitalia.
I've never actually seen it on the palmsor the soles of the feet, but it extends
beyond the areas that are treated.
So you can often go down tothe wrists and on the arms and
down the legs and on the body.
It typically occurs in youngpeople, including little children.
(09:45):
But it's most common for somereason in women in their, sort
of, 20 to 30 year age group.
And once you've got it, it can lastfor months or even years after you've
managed to come off the topical steroid.
And during those years, you can haveunpredictable flares brought on by a
whole variety of different circumstances.
So it's the unpredictability and theseverity of it that can be so disabling.
(10:08):
And I'm guessing, obviously, it doesdepend partly on the strength of the
topical steroids that are being used.
If you're using a very strong topicalsteroid, you're more likely to fire it up.
But I also wonder whether if you'reusing a milder, topical steroid, which
are very commonly used, if you're usingthose for longer than perhaps may be
(10:32):
sensible, again, that can fire it up too.
You're absolutely right.
Yep.
The potent topical steroidsare the greatest risk.
But as you say, because we use somuch more mild topical steroids,
in my experience, they are thecause of it much more often.
We should also be aware of theinadvertent use of topical steroids.
(10:53):
For example, the residueleft on your hand.
You've treated your child'seczema as their caregiver.
You washed your hands perhaps, butthere's still a tiny residue there.
And then your hand goes up to yourface at night or whatever, and that
small amount of steroid can be allit needs to trigger this change.
And the natural thing to do when you seethat is to want to put more steroid on it.
(11:14):
Another important point to point out, wethink of hydrocortisone being a weak or a
very mild topical steroid, it usually is.
But there are some hydrocortisone salts,such as that found in Locoid® which are
actually very potent topical steroids.
So you need to know whatyou're dealing with.
And there are, unfortunately,people who go out to get very potent
(11:34):
topical steroids, not realising thatthey're using a topical steroid.
There's one available on the highstreets called Abido, which is
used to try and lighten dark skin.
And so the illicit use of topicalsteroids where people don't even know
that they're using a topical steroid,and that could trigger this as well.
(11:54):
Now, we touched there on the problemswith the medical profession, we've,
sort of, been reluctant to acknowledgethe existence even of Topical Steroid
Withdrawal and how people can getinto that awful, vicious cycle.
I have heard something which, if youlike, takes it up a gear even more,
(12:15):
where parents have been accused ofchild abuse because they have realised
that their child has Topical [Steroid]Withdrawal Syndrome and the topical
steroids are causing the problems.
But they refuse to accept the medicaladvice to use even stronger topical
steroids and they're castigated for it.
(12:35):
And isn't that just dreadful?
It really is appalling and it's thisignorance in the medical profession
and this blinkered approach, isreally not helping anybody at all.
And so often I hear a patient's reluctanceto use a topical steroid is blamed for
their ongoing and worsening condition,exactly like that child abuse case.
(12:59):
And that just completely underminesthe doctor-patient relationship.
And things can rapidly becomeadversarial, loss of trust both
ways, um, miscommunication andit's just, it's so unnecessary.
We shouldn't allow things to fallinto that degree of dysfunction.
(13:20):
We should be listening to our patientsand the chances are that they're right.
And we should be working with them tohelp them, rather than blame them for
not adhering precisely to what we'd said.
Particularly when it turnsout that we could be wrong.
And the fact it remains poorly understooddoesn't help all that in the mix either.
(13:42):
It doesn't and sadly, there's virtuallyno research, that I know of, going
into this matter, into this condition.
And to make things even moreworrying, we don't currently have
any effective treatment or don't knowwhat to do with it, other than to
say, "it does usually get better".
Although it takes years,it does usually get better.
(14:03):
And the one thing that's important isnot to put any more topical steroid
near the face or the skin that'saffected, just stop them altogether.
And even steroids by mouthor by injection, they can
aggravate things as well.
So you've just got to accept that,that's not a treatment option
for you for, possibly forever.
(14:26):
But being a bit more optimisticbecause this has been very depressing.
In time it does usually get betterand I hope that when we meet our
guest, you will see that this is acondition that can come under control,
although it has ongoing issues.
But it can be something that in thefullness of time does tend to get better.
(14:46):
So I think at that point, I would reallylike to introduce our guest speaker.
Over to you, Roger.
Briana, who we mentioned at the top ofthe show, has been unfortunate enough
to have suffered from severe eczema andis currently on high-intensity treatment
for that to help keep it in control.
(15:06):
Now, unlike George and I, whoare blissfully ignorant about
experiencing Topical SteroidWithdrawal, she has unfortunately
had terrible problems in this area.
And I think perhaps some of the thingsthat George and I have talked about
have really resonated with her journey.
Briana's currently studying filmdirecting, a very busy schedule, but
(15:27):
she's taking a break from her studiesto join us today and we really do thank
you so much for coming along Briana.
I suppose in a nutshell,just tell us your story.
What are your experiences inthe real world about, topical
steroids and their withdrawal?
Yeah.
How long is this podcast?
[laughter]
(15:48):
I mean, honestly, what you guys havebeen talking about is so important.
My journey just starting withprescription topical steroids
was really when I was much older.
I had eczema growing up, in thenormal areas, creases of the arms,
maybe the neck, behind the knees.
I know as a dancer, I would, you know,get sweaty and those are the areas
(16:10):
that would cause the most annoyance.
But, at 22, I started a job ona cruise ship, performing, and,
I don't know what happened.
I believe it was probably a rampantfungal infection, that I had caught.
But I went to a dermatologist, shestated, "I know exactly what you need" and
then just threw the kitchen sink at me.
(16:31):
I was on different antifungals andantibiotic and antifungal cream, a
topical steroid and two differentantihistamines and Protopic®.
So I just had like a slew of thingsand for about, three years, I was
very up and down having to use allof these things and the spots where
(16:52):
my eczema was started to spread.
And at one point she didn'treally even know what to do.
I was put on ciclosporin forabout six months, but it was really
kicking my kidneys, so went off ofthat, [it] wasn't really helping.
I had gotten married near the end of 2014and decided, you know what, I'm having to
(17:12):
like tiptoe like eggshells around my skin.
Why don't I just give myself abreak from all of this medication?
And when I tried to stop,I found out I couldn't.
Anytime I stopped using the steroid,it would just start spreading.
It would spread through my wrists.
It would spread around my pelvicregion, through my back and then my
eyes started swelling really badly.
(17:34):
And then for about, almost twomonths, it was just questions.
Searching the internet, goingto the emergency room, going
to my, family care doctor.
They're giving me steroid shots, they'regiving me steroid packs, like, orals
to try and figure out what's going on.
It must be an allergy.
And I stumbled upon TopicalSteroid Withdrawal online, [by]
(17:55):
finding someone on YouTube.
And that's the biggest thingwith this group, we find out
about it because of social media.
Nowadays it's more TikTok and Instagram,but back then we didn't have that.
It was mostly YouTube and a verysmall Facebook group and a fairly
brand new ITSAN, the InternationalTopical Steroid Awareness Network.
(18:19):
And from there, I just knewthat's what I was going through.
My last steroid oral was January 25th2015, and I haven't touched them since.
The withdrawal process is gruesome.
I mean, I lost my hair.
My hair was falling out.
I was red from head to toe.
(18:39):
I was oozing and crusting andsticking to my clothing and my
sheets and I couldn't work anymore.
So financially it'scompletely debilitating.
And then it puts more pressure onyour family and your partner to take
care of you and hold that end up.
You know, my marriage fellapart through all of this.
[It's] really, really hard on people.
(19:00):
And when you try to go to a doctor,which is what I did at three months.
It was at a university that I went toand it was a teaching hospital and I was
getting excited that someone would, youknow, be able to talk to me about this
and it was just completely pushed aside.
My history wasn't even taken well andthey just offered me like more steroids.
(19:20):
"I needed probably a Kenalog® shot",they said, and I just knew it was going
to be an uphill battle from there.
But no matter what research Ibrought in, no one cared to look at
it or read it or take the time totalk to me about it, which is what
you said, breaks down the trust.
Because if I can't talk to my doctorabout it, they're not listening to
(19:41):
me, so why should I listen to them?
That's the kind of battlefor about eight years.
It's so sad and sodisempowering, isn't it?
And so disappointing as well.
Do you think things are changing or not,from what you see on the social media
side of things, from talking to people?
Very, very slowly.
The only thing that's really changing isthat the message is reaching more people.
(20:06):
Through our social media, I have aTikTok [account] but I'm never on it.
It's more for the younger generation thanI am and they've just been blowing it up.
People see this andthey, become aware of it.
And I think that's probably thegrowing issue as well as now.
People with, you know, skin conditions,especially eczema, they're going to their
(20:28):
doctor and asking, "is this a concern?"
and their doctor islike, "no, this is dumb".
You have research callingus 'steroid phobic' or, you
know, 'corticosteroid phobic'.
Why on earth now is that patient goingto look at that doctor and go, "oh,
okay, I can really trust this person."
So it just, it createsan even bigger barrier.
(20:50):
I believe nowadays some doctorsare, I can't say learning about it.
Like you said, you didn't learnabout it in school or in textbooks.
I've even spoken to and interviewedsome doctors who are recently out
of school and they're like, "wedidn't learn about it in school."
We didn't learn aboutdermatology, I'm afraid.
Yeah.
So it's not being disseminatedwhere it should be.
(21:13):
So I feel very lucky that I've intervieweddoctors who do know about it and want
to be a part of the conversation.
But sadly, I don't think thegeneral, you know, GP, paediatrician,
even dermatologist, I just don'tthink they're very knowledgeable.
Some may be curious and hopefully wecan find those compassionate doctors
(21:35):
to like, start looking into things.
But right now it's still very much,it feels like a grassroots effort.
Yeah.
I'm seeing the early roots of theprofession acknowledging this.
There's, for example, a statement by theNES, the National Eczema Society and the
British Association of Dermatologists.
In my view, definitely acknowledging it...
(21:57):
It's there.
And feeling that we needto move in that direction.
There's an Americanorganisation who produced the
equivalent of our NICE report.
I think back in 2015.
That's right.
Yes, American Academy of Dermatology.
Thank you.
Back in 2015, they pretty welldismissed it and barely mentioned it.
And in the more recent articleor guideline on atopic eczema,
(22:20):
they do acknowledge it a bit.
But it really is just the earlyroots of some acknowledgement
that this is something thatwe need to be thinking about.
No, this is not that uncommon.
This is devastating, and this needsa revolutionary way of thinking about
things and helping this group of people.
Seriously, they know more about itthan we ever will, and they know what
(22:43):
it feels like, and they need help andsupport in so many areas of their lives.
Absolutely.
Briana, just in your extensiveexperience of talking to people,
unfortunate enough to go through this;did they sort of say to you that one
of the stock responses from healthcareprofessionals is to instantly become
(23:03):
defensive and the barriers come up?
Because that unfortunately canhappen, you know, in a whole range
of medical conditions when healthcareprofessionals are challenged.
Does it just become prettyadversarial quite quickly?
Sadly, that's what I mostly see.
You get the odd posts where they'relike, "oh my goodness, I want to
(23:25):
share this doctor's name everywherebecause they're so wonderful.
And I wish everybodycould see this doctor".
But a lot of the times, it's just verydisheartening, heartbreaking posts
where someone is just so desperate,they didn't even want to go to the
doctor, but they knew they had to.
And the second they go in, they'rejust told "this isn't your problem.
This is not what's happening."
(23:46):
And usually they're either offered atopical steroid or nowadays, you do
have the, you know, immunosuppressantsand the biologics and things.
And people just get scared becausethey're like "this one pharmaceutical
drug did this to me and it's not beingacknowledged that it did this to me.
I don't know what theseother drugs are going to do."
So people tend to just shyaway from any help whatsoever,
(24:09):
which is also detrimental.
Like if you do have a bacterialinfection and it needs to be taken
care of, and you're not going tothe doctor to get it taken care of,
it's just very, It's very scary.
It's sad that, you know, thepeople that we should go to for
help, we feel like we can't.
Yeah, it's almost a plague on alltheir houses really, understandably.
(24:30):
But what an indictmentof our profession, Roger.
Absolutely, it's deeply,depressing if I'm bluntly honest.
Are you trying to highlightawareness however you can with
healthcare professionals or theones that want to listen, Briana?
I mean, I've been trying to do arange of things since the beginning.
(24:50):
I didn't know what I was doing.
I have a writing backgroundand I was a performer.
I tried to help our community, firstof all, and then when I created the
first documentary for this, I wasreally trying to work with ITSAN.
I don't work on the board,I just work beside them.
I love what they're trying to do andthey would help, you know, take me to
(25:12):
different conferences that they couldas a patient advocate and I would
start to talk to different doctors.
And I've been so grateful to be ableto connect with a lot more doctors.
I've been to Washington DC twicenow for what they call Hill Day, to
try and help lobby for, you know,access of care and things like that.
So any doctor that I can speak to, I will.
(25:34):
But it's usually the ones thatare already in the realm of being
curious that I end up speaking to.
The ones that have no idea about it areusually the derm or the allergist or
someone that I have to go to becauseI need something and it's very hit
and miss, sadly, talking to them.
So it's been a mixed bag when itcomes to talking to professionals.
(25:58):
And if anyone listening would likemore information to look at it in a bit
more detail, do you have any pointersas to where the first port of call
might be useful for them to look at?
I usually always point peopleto www.itsan.org, I-T-S-A-N.org.
It is our non-profit for this condition.
It is based in the States, but theinformation can be used anywhere.
(26:22):
They have so much on thewebsite as much as they can.
Like any new research and thingslike that, what to look for.
Especially if you're someone that's beenusing topical steroids for years, and
you've had potency building up higher andhigher, you know, they just are trying
to showcase what the problem is and whatthey're trying to do to solve the problem.
(26:45):
So that's probably the first placeand then I have my documentary.
It's more just to help maybethat patient feel less alone.
If they do feel that they'regoing through it or they are going
through it or their family ishaving to watch them go through it.
It has just different stories frompatients all around the world and a
(27:05):
few doctors who talk on the topic.
Where can that be seen?
It's on my YouTube channeljust under, Briana Banos.
It's called 'Preventable: Protecting Our Largest Organ'. (27:15):
undefined
I love the ITSAN website.
It's so reasonable.
It's so informed.
It's balanced.
It's fair.
But there's another website that I'venoticed, I think you brought this to my
attention, Briana, called 'Scratch That'.
Which was started, I think,by five or six young people,
(27:39):
teenagers by the look of things.
It's a UK-based website, I think,and they've got, again, vast
amounts of information there.
Stories and details of what thisis all about and if anything is
going to make your heart reallysad, it's going to their website.
And I'm hoping it's going tochange the way in which the medical
(28:01):
profession starts to look at thiscondition and we get engaged with
it, get involved in the research.
and take that forward.
Are you aware of any usefulresearch being done at all, Briana?
Yes, I will say with 'ScratchThat', um, it was a few women in
their like mid-twenties, and I'vethankfully gotten to interview two
of them for my future documentary.
(28:22):
They've tried to gather asmuch research as they can.
I know they did the big push for, Ibelieve it's your Yellow Card, to try
and get people to put in that theyhad symptoms and things happening.
So, again, grassroots.
You know, people aretrying to get it out there.
I believe there's possiblysomething happening in the UK.
(28:44):
Like I know NES, I don't thinkthey're doing anything specifically
for TSW, but I know that they'retrying to raise more awareness
with how to use topical steroids.
With colour coding fordifferent strengths.
Correct.
And then in the States, I'm actually partof a study that is still in the process.
There's no funding going intofiguring this out, but we were lucky
(29:08):
enough to catch the curiosity ofone doctor and the study is ongoing.
We're still trying to gather theinformation that they need, but I'm
hoping it looks really promising.
They're trying to look ateverything from all angles.
So I'm hoping that somethingdoes come out of it.
You just, you never know.
(29:29):
If I was in the world of dermatologytoday, as a young doctor, I have
to say, I would embrace this.
This would be one of the most fascinatingareas of research to get involved in.
We don't understand itand it needs an answer.
So Briana, having gone through theamazing journey that you've gone through;
to anyone who is in your shoes, do youhave any practical tips or advice from
(29:52):
all the experience you've now got?
So I think the biggest thingemotionally is you're valid.
You are seen.
You are going through,what you are going through.
If a doctor says otherwise, knowthat you are not alone in that.
There's a community behind you.
If you haven't joined a forum or ifyou don't have, you know, the Instagram
(30:16):
community or the TikTok community,I highly recommend going there.
It's nice to lean on other peoplewho know what you're going through.
It's very important.
I know some people go totherapy to help with this.
This is a traumatic experience.
It is something that even when youare healed, and that will come, it
(30:37):
can last emotionally longer than thephysical process of going through it.
So please be aware of those things.
Try and have support aroundyou with family and friends.
Lean on them and don'tcompare yourself to others.
Everyone's journey is different.
(30:58):
When we start setting goals and startsetting expectations of when I'm
going to be healed, the disappointmentstarts to set in and that's when
the real depression and anxietystarts to fall on your shoulders.
Cause you know, my timeline isgoing to be different than yours.
I'm a veteran, you know,having to go through it.
So I would say take it day by day.
(31:18):
Don't compare yourself to others.
And then physically, things that havehelped so many people are if you can get
into the bath, you know, dead sea salts.
Fans, a fan is your friend,especially with not being able
to regulate your temperature.
I know when it came to oozing, Iwould use things like Viscopaste
(31:39):
bandages, things like that.
I know that there are differentbeddings and things like silk or, you
know, things that may not stick toyour face as much as something else.
Just try and keep ashealthy as you can be.
Don't eat a lot of junk if you can.
Just try and help yourbody as much as you can.
(32:00):
Drink a lot of water,eat a lot of protein.
I believe that there was a studythat showed people who are burn
victims, are usually given ahigher protein diet to help with
their healing, like wound healing.
And we're kind of in the sameboat, so that may just help some.
So it's just things like that.
And not to beat yourself up.
(32:22):
One day you might be doingwell and the next you may not.
And you'll sit there and, you know,try and figure out what it was that
triggered you, and it may not havebeen anything that you could stop.
So just be gentle.
There isn't a, there isn't a HolyGrail of an answer yet, is there?
So even though you might be going toa doctor who acknowledges and empowers
(32:43):
your position and supports you, they'renot then going to be able to say
"take this and it will get better".
We haven't got that answer yet.
What we do know is that you justcannot afford to put topical steroids
on that skin again, probably ever.
And it will take a long time.
(33:04):
And we're talking if you'relucky months, but probably years.
And years of it remainingunstable and unpredictable
Up and down, yeah.
Healing is not a linear journey.
No, well that's really helpful.
Thank you very much indeed.
Briana, I can't thank you enoughfor coming along to speak with
(33:27):
us today, and for sharing suchpersonal and important experiences.
It's an absolute eye-opener.
So grateful to you and I thinkour listeners will equally
share my gratitude there.
Let's hope in the near future we mightsee a more informed and more empathetic
medical profession helping our patientswith this dreadful condition and I'd love
(33:50):
to see some more research going on there.
So thank you very much indeed.
No, thank you.
Absolutely.
I just second everything.
It's been an inspiring anda humbling talk, you know,
reflecting on our profession.
But it's with people like you Brianathat, can help take us forward.
So, so thank you.
Well, I think that's an appropriateplace to bring this particular
(34:11):
episode to a close, George.
So, I do hope that people listeninghave found it interesting and helpful.
If you do enjoy these podcasts, then dorate and review us, because it really
does help us in putting them together.
And we'd love to hear your feedback.
We'd also like to thank our sponsor,AproDerm®, for all their help in putting
these Skin Deep podcasts together.
(34:31):
We couldn't have done it without them.
So, until the next time,it's goodbye from George.
Goodbye.
And it's goodbye from me.
Goodbye.
Hello, and welcome to this Skin Deeppodcast, where we look at skin-related
issues, conditions, and treatments inan interesting and informative way.
I'm Dr Roger Henderson.
I've been a doctor in the NHS foralmost 40 years and I've got a
long-standing interest in dermatology.
And I'm Dr George Moncrieff.
I was also a GP, although I'venow retired from my practice.
(00:29):
I'm a primary care advisor to the NationalEczema Society and the former Chair of
the Dermatology Council for England.
This is the second of two podcastswe're doing about topical steroids
and if you were with us for the first,we do hope you found it helpful.
But this time we're going to be looking atTopical Steroid Withdrawal and some of the
potential problems associated with this.
(00:51):
In addition, George and I are absolutelydelighted to be joined by our special
guest for this episode, Briana Banos.
Briana is an amazing individualwith an incredible journey involving
topical steroids and she'll help usunderstand the patient's perspective
of Topical Steroid Withdrawal.
(01:16):
Now I'm just wondering, George, somepeople listening will be thinking,
"well I've never heard of TopicalSteroid Withdrawal and this must be
something new", but I think we bothknow that it's far from new, isn't it?
Absolutely, it's not anew condition at all.
Although it does appear that we arerecognising Topical Steroid Withdrawal
Syndrome more frequently nowadays.
It was first discussed back in 1973,would you have it, that's 50 years ago.
(01:41):
Then in 1979, a couple of veryimpressive dermatologists coined
the term Topical Steroid Addictionfor the same thing really.
Typically patients with this conditionfind that their steroid treatment
starts to work less effectively.
Understandably, that initiallyencourages them to start using it more
or using a stronger topical steroid.
(02:03):
But things continue to deteriorate.
The topical steroid is exhibitingwhat doctors call tachyphylaxis.
This is where treatment starts towork less effectively and that's
a feature of true addiction.
And thinking about it starting, then,does it usually come on just when it's
stopped or can it develop, sort of,during treatment, between treatments,
(02:26):
or how long might people be using theirsteroids before this starts to develop?
It's hugely variable.
It's remarkably variable.
Sometimes, as you say, it startsafter years of successfully using a
topical steroid, and then suddenlythe patient runs into problems.
Other times, it can come on withinjust a couple of weeks of starting one.
(02:47):
But it's a very debilitating conditionand, as you say, it can come on between
treatments or even during treatment.
And to anyone thinking, "well, I'm,I'm probably the only person I know
that's suffering from this condition".
How common do we think it maybe out there in the real world?
Well you're almostcertainly not on your own.
(03:09):
Studies recently have confirmedthat it is hugely under-recognised
and have demonstrated thatit's pretty common really.
Affecting just over 10% ofpeople who use a topical steroid.
Admittedly that means that nearly90% of people using a topical
steroid have no problems, whatsoever,which is great news for them.
(03:32):
This is under-recognisedand underdiagnosed.
Yeah, it's a lot ofpeople potentially still.
I'm going to take a punt here andsuggest that when we start to drill
down into what's causing Topical SteroidWithdrawal actually in the skin, uh,
we like to think we know everything.
I suspect we know very little about this.
(03:52):
That is just a punt, but haveI gambled that one right?
You have indeed.
Yeah.
If only we knew what was going on.
In the last podcast, we describedhow topical steroids actually
weaken the skin barrier.
And it may be that people whoseskin barrier is more vulnerable,
are more vulnerable to getting this.
But furthermore, when we measurehow strong a topical steroid
(04:13):
is, we use a surrogate marker.
We measure how much it makes the skin gowhite by constricting the blood vessels.
The very small arteries areconstricted by topical steroids
and we use that as a marker.
How long it lasts and how severe it is.
As we all know, facial skinhas considerable capacity
to vary its blood supply.
(04:35):
For example, some people when they'restressed or emotionally upset, their face
goes red, [they] have a facial flush.
And that tendency to flushingand blushing is very individual.
And I just wonder, this hasn't beenconfirmed, but I just wonder whether
something similar might be going on here.
That a topical steroid for some reasonhas triggered some instability in the
(04:58):
normal control of the blood flow tothe skin on the face, for example,
or the skin wherever it occurs.
And that's what's going on here.
So what we see in the very early stages ofthis problem, the skin becomes bright red.
Looking and patients sayingfeeling like severe sunburn.
And this can be extremely unpleasantwith intractable itch and a burning
(05:22):
pain which can be so severe, that evenwashing with plain water is unbearable.
Can you imagine that?
The thought of applying a simplemoisturiser, an emollient, is
untenable for these individuals.
And this is called the Red Skin Syndrome.
The changes that you see in theskin can extend beyond the area
(05:45):
of skin that was previouslytreated with the topical steroid.
And these dilated bloodvessels, when you dilate a blood
vessel, it can become leaky.
Molecules escape into the tissuesand take with them some fluid.
So you get some swellingaround the ankles or the face.
If it affects the face, can become reallydisfigured from swelling around the eyes,
(06:05):
completely changing how somebody looks.
And with this all, thermoregulation, theability to keep your core temperature
right by controlling the blood flow tothe skin, for example, that goes AWOL.
And results in patients, withthis, feeling too cold or too hot
and being unable to control that.
Hardly surprisingly, sleepis disrupted dreadfully.
(06:28):
Many experience extreme fatigue,partly due to that disturbed sleep.
Hardly surprisingly again, they goon to get emotional fluctuations.
And when it's severe can go on todevelop severe depression and anxiety.
At this stage, Topical Steroid WithdrawalSyndrome can look a bit like eczema.
And it's easy to understand howso many physicians seeing this
(06:51):
come to the conclusion that theproblem is that the patient isn't
using enough topical steroid.
And if only they would listen toour advice and take more treatment,
their condition would get better.
But if this is what's goingon, that would be a disaster.
And as if that's not unpleasantenough, it then can progress on to
(07:12):
more severe patterns, with lumps inthe skin, massive flaking of the skin.
To give you some idea of how severethat is, it's often called, snowing.
It just describes how markedthat loss of skin can be.
They can develop deep, painful cracksin the skin, and dramatic crusting.
(07:33):
This is not infected eczema andantibiotics generally don't help here
and it's different from eczema relapses.
For a start, it involves a wider area ofskin than the area that was being treated.
I have seen cases where it'slooked far worse than the worst
cases of eczema I've ever seen.
And I almost hesitate to say thisbecause this is so unfortunate and
(07:56):
a little depressing if I'm honest.
I have no doubt that there will be manypeople with Topical Steroid Withdrawal,
who look like that [and] go alongto their healthcare professional.
Healthcare professional looks in thenotes, they have eczema, "ah, fine, let's
treat the eczema, let's hit it harder".
They double down on their steroids,and you are just hosing down
(08:18):
that fire with petrol and that'sa terrible thing to imagine.
I think that's one of the biggestproblems for patients with this.
Until recently our professionhas been remarkably reluctant
to acknowledge it even exists.
And as a result, it's not diagnosed.
In their book, it remains rarebecause it wasn't diagnosed.
(08:39):
It doesn't mean it wasn't there,but in their eyes, it doesn't exist.
So it's not taught.
I'm not sure about you, but Iwas never taught about this.
Even though it was described, 50years ago, and it's not considered
in the differential diagnosis.
So the cycle goes on and theproblem is repeatedly dismissed.
Can you imagine how grim it must be tohave an extremely painful, bright red
(09:02):
face that goes on to become cracked,crusty, swollen, and severely disfigured?
And to have doctors blame you forthe fact that you're not treating it
with what they're recommending, whichyou know is going to make it worse.
Yeah, I can't, and ina way I don't want to.
It's awful.
Does it have a predilection for anyparticular parts of the body, by the way?
(09:24):
Yes it does.
It usually involves the head andneck, or can involve the genitalia.
I've never actually seen it on the palmsor the soles of the feet, but it extends
beyond the areas that are treated.
So you can often go down tothe wrists and on the arms and
down the legs and on the body.
It typically occurs in youngpeople, including little children.
(09:45):
But it's most common for somereason in women in their, sort
of, 20 to 30 year age group.
And once you've got it, it can lastfor months or even years after you've
managed to come off the topical steroid.
And during those years, you can haveunpredictable flares brought on by a
whole variety of different circumstances.
So it's the unpredictability and theseverity of it that can be so disabling.
(10:08):
And I'm guessing, obviously, it doesdepend partly on the strength of the
topical steroids that are being used.
If you're using a very strong topicalsteroid, you're more likely to fire it up.
But I also wonder whether if you'reusing a milder, topical steroid, which
are very commonly used, if you're usingthose for longer than perhaps may be
(10:32):
sensible, again, that can fire it up too.
You're absolutely right.
Yep.
The potent topical steroidsare the greatest risk.
But as you say, because we use somuch more mild topical steroids,
in my experience, they are thecause of it much more often.
We should also be aware of theinadvertent use of topical steroids.
(10:53):
For example, the residueleft on your hand.
You've treated your child'seczema as their caregiver.
You washed your hands perhaps, butthere's still a tiny residue there.
And then your hand goes up to yourface at night or whatever, and that
small amount of steroid can be allit needs to trigger this change.
And the natural thing to do when you seethat is to want to put more steroid on it.
(11:14):
Another important point to point out, wethink of hydrocortisone being a weak or a
very mild topical steroid, it usually is.
But there are some hydrocortisone salts,such as that found in Locoid® which are
actually very potent topical steroids.
So you need to know whatyou're dealing with.
And there are, unfortunately,people who go out to get very potent
(11:34):
topical steroids, not realising thatthey're using a topical steroid.
There's one available on the highstreets called Abido, which is
used to try and lighten dark skin.
And so the illicit use of topicalsteroids where people don't even know
that they're using a topical steroid,and that could trigger this as well.
(11:54):
Now, we touched there on the problemswith the medical profession, we've,
sort of, been reluctant to acknowledgethe existence even of Topical Steroid
Withdrawal and how people can getinto that awful, vicious cycle.
I have heard something which, if youlike, takes it up a gear even more,
(12:15):
where parents have been accused ofchild abuse because they have realised
that their child has Topical [Steroid]Withdrawal Syndrome and the topical
steroids are causing the problems.
But they refuse to accept the medicaladvice to use even stronger topical
steroids and they're castigated for it.
(12:35):
And isn't that just dreadful?
It really is appalling and it's thisignorance in the medical profession
and this blinkered approach, isreally not helping anybody at all.
And so often I hear a patient's reluctanceto use a topical steroid is blamed for
their ongoing and worsening condition,exactly like that child abuse case.
(12:59):
And that just completely underminesthe doctor-patient relationship.
And things can rapidly becomeadversarial, loss of trust both
ways, um, miscommunication andit's just, it's so unnecessary.
We shouldn't allow things to fallinto that degree of dysfunction.
(13:20):
We should be listening to our patientsand the chances are that they're right.
And we should be working with them tohelp them, rather than blame them for
not adhering precisely to what we'd said.
Particularly when it turnsout that we could be wrong.
And the fact it remains poorly understooddoesn't help all that in the mix either.
(13:42):
It doesn't and sadly, there's virtuallyno research, that I know of, going
into this matter, into this condition.
And to make things even moreworrying, we don't currently have
any effective treatment or don't knowwhat to do with it, other than to
say, "it does usually get better".
Although it takes years,it does usually get better.
(14:03):
And the one thing that's important isnot to put any more topical steroid
near the face or the skin that'saffected, just stop them altogether.
And even steroids by mouthor by injection, they can
aggravate things as well.
So you've just got to accept that,that's not a treatment option
for you for, possibly forever.
(14:26):
But being a bit more optimisticbecause this has been very depressing.
In time it does usually get betterand I hope that when we meet our
guest, you will see that this is acondition that can come under control,
although it has ongoing issues.
But it can be something that in thefullness of time does tend to get better.
(14:46):
So I think at that point, I would reallylike to introduce our guest speaker.
Over to you, Roger.
Briana, who we mentioned at the top ofthe show, has been unfortunate enough
to have suffered from severe eczema andis currently on high-intensity treatment
for that to help keep it in control.
(15:06):
Now, unlike George and I, whoare blissfully ignorant about
experiencing Topical SteroidWithdrawal, she has unfortunately
had terrible problems in this area.
And I think perhaps some of the thingsthat George and I have talked about
have really resonated with her journey.
Briana's currently studying filmdirecting, a very busy schedule, but
(15:27):
she's taking a break from her studiesto join us today and we really do thank
you so much for coming along Briana.
I suppose in a nutshell,just tell us your story.
What are your experiences inthe real world about, topical
steroids and their withdrawal?
Yeah.
How long is this podcast?
[laughter]
(15:48):
I mean, honestly, what you guys havebeen talking about is so important.
My journey just starting withprescription topical steroids
was really when I was much older.
I had eczema growing up, in thenormal areas, creases of the arms,
maybe the neck, behind the knees.
I know as a dancer, I would, you know,get sweaty and those are the areas
(16:10):
that would cause the most annoyance.
But, at 22, I started a job ona cruise ship, performing, and,
I don't know what happened.
I believe it was probably a rampantfungal infection, that I had caught.
But I went to a dermatologist, shestated, "I know exactly what you need" and
then just threw the kitchen sink at me.
(16:31):
I was on different antifungals andantibiotic and antifungal cream, a
topical steroid and two differentantihistamines and Protopic®.
So I just had like a slew of thingsand for about, three years, I was
very up and down having to use allof these things and the spots where
(16:52):
my eczema was started to spread.
And at one point she didn'treally even know what to do.
I was put on ciclosporin forabout six months, but it was really
kicking my kidneys, so went off ofthat, [it] wasn't really helping.
I had gotten married near the end of 2014and decided, you know what, I'm having to
(17:12):
like tiptoe like eggshells around my skin.
Why don't I just give myself abreak from all of this medication?
And when I tried to stop,I found out I couldn't.
Anytime I stopped using the steroid,it would just start spreading.
It would spread through my wrists.
It would spread around my pelvicregion, through my back and then my
eyes started swelling really badly.
(17:34):
And then for about, almost twomonths, it was just questions.
Searching the internet, goingto the emergency room, going
to my, family care doctor.
They're giving me steroid shots, they'regiving me steroid packs, like, orals
to try and figure out what's going on.
It must be an allergy.
And I stumbled upon TopicalSteroid Withdrawal online, [by]
(17:55):
finding someone on YouTube.
And that's the biggest thingwith this group, we find out
about it because of social media.
Nowadays it's more TikTok and Instagram,but back then we didn't have that.
It was mostly YouTube and a verysmall Facebook group and a fairly
brand new ITSAN, the InternationalTopical Steroid Awareness Network.
(18:19):
And from there, I just knewthat's what I was going through.
My last steroid oral was January 25th2015, and I haven't touched them since.
The withdrawal process is gruesome.
I mean, I lost my hair.
My hair was falling out.
I was red from head to toe.
(18:39):
I was oozing and crusting andsticking to my clothing and my
sheets and I couldn't work anymore.
So financially it'scompletely debilitating.
And then it puts more pressure onyour family and your partner to take
care of you and hold that end up.
You know, my marriage fellapart through all of this.
[It's] really, really hard on people.
(19:00):
And when you try to go to a doctor,which is what I did at three months.
It was at a university that I went toand it was a teaching hospital and I was
getting excited that someone would, youknow, be able to talk to me about this
and it was just completely pushed aside.
My history wasn't even taken well andthey just offered me like more steroids.
(19:20):
"I needed probably a Kenalog® shot",they said, and I just knew it was going
to be an uphill battle from there.
But no matter what research Ibrought in, no one cared to look at
it or read it or take the time totalk to me about it, which is what
you said, breaks down the trust.
Because if I can't talk to my doctorabout it, they're not listening to
(19:41):
me, so why should I listen to them?
That's the kind of battlefor about eight years.
It's so sad and sodisempowering, isn't it?
And so disappointing as well.
Do you think things are changing or not,from what you see on the social media
side of things, from talking to people?
Very, very slowly.
The only thing that's really changing isthat the message is reaching more people.
(20:06):
Through our social media, I have aTikTok [account] but I'm never on it.
It's more for the younger generation thanI am and they've just been blowing it up.
People see this andthey, become aware of it.
And I think that's probably thegrowing issue as well as now.
People with, you know, skin conditions,especially eczema, they're going to their
(20:28):
doctor and asking, "is this a concern?"
and their doctor islike, "no, this is dumb".
You have research callingus 'steroid phobic' or, you
know, 'corticosteroid phobic'.
Why on earth now is that patient goingto look at that doctor and go, "oh,
okay, I can really trust this person."
So it just, it createsan even bigger barrier.
(20:50):
I believe nowadays some doctorsare, I can't say learning about it.
Like you said, you didn't learnabout it in school or in textbooks.
I've even spoken to and interviewedsome doctors who are recently out
of school and they're like, "wedidn't learn about it in school."
We didn't learn aboutdermatology, I'm afraid.
Yeah.
So it's not being disseminatedwhere it should be.
(21:13):
So I feel very lucky that I've intervieweddoctors who do know about it and want
to be a part of the conversation.
But sadly, I don't think thegeneral, you know, GP, paediatrician,
even dermatologist, I just don'tthink they're very knowledgeable.
Some may be curious and hopefully wecan find those compassionate doctors
(21:35):
to like, start looking into things.
But right now it's still very much,it feels like a grassroots effort.
Yeah.
I'm seeing the early roots of theprofession acknowledging this.
There's, for example, a statement by theNES, the National Eczema Society and the
British Association of Dermatologists.
In my view, definitely acknowledging it...
(21:57):
It's there.
And feeling that we needto move in that direction.
There's an Americanorganisation who produced the
equivalent of our NICE report.
I think back in 2015.
That's right.
Yes, American Academy of Dermatology.
Thank you.
Back in 2015, they pretty welldismissed it and barely mentioned it.
And in the more recent articleor guideline on atopic eczema,
(22:20):
they do acknowledge it a bit.
But it really is just the earlyroots of some acknowledgement
that this is something thatwe need to be thinking about.
No, this is not that uncommon.
This is devastating, and this needsa revolutionary way of thinking about
things and helping this group of people.
Seriously, they know more about itthan we ever will, and they know what
(22:43):
it feels like, and they need help andsupport in so many areas of their lives.
Absolutely.
Briana, just in your extensiveexperience of talking to people,
unfortunate enough to go through this;did they sort of say to you that one
of the stock responses from healthcareprofessionals is to instantly become
(23:03):
defensive and the barriers come up?
Because that unfortunately canhappen, you know, in a whole range
of medical conditions when healthcareprofessionals are challenged.
Does it just become prettyadversarial quite quickly?
Sadly, that's what I mostly see.
You get the odd posts where they'relike, "oh my goodness, I want to
(23:25):
share this doctor's name everywherebecause they're so wonderful.
And I wish everybodycould see this doctor".
But a lot of the times, it's just verydisheartening, heartbreaking posts
where someone is just so desperate,they didn't even want to go to the
doctor, but they knew they had to.
And the second they go in, they'rejust told "this isn't your problem.
This is not what's happening."
(23:46):
And usually they're either offered atopical steroid or nowadays, you do
have the, you know, immunosuppressantsand the biologics and things.
And people just get scared becausethey're like "this one pharmaceutical
drug did this to me and it's not beingacknowledged that it did this to me.
I don't know what theseother drugs are going to do."
So people tend to just shyaway from any help whatsoever,
(24:09):
which is also detrimental.
Like if you do have a bacterialinfection and it needs to be taken
care of, and you're not going tothe doctor to get it taken care of,
it's just very, It's very scary.
It's sad that, you know, thepeople that we should go to for
help, we feel like we can't.
Yeah, it's almost a plague on alltheir houses really, understandably.
(24:30):
But what an indictmentof our profession, Roger.
Absolutely, it's deeply,depressing if I'm bluntly honest.
Are you trying to highlightawareness however you can with
healthcare professionals or theones that want to listen, Briana?
I mean, I've been trying to do arange of things since the beginning.
(24:50):
I didn't know what I was doing.
I have a writing backgroundand I was a performer.
I tried to help our community, firstof all, and then when I created the
first documentary for this, I wasreally trying to work with ITSAN.
I don't work on the board,I just work beside them.
I love what they're trying to do andthey would help, you know, take me to
(25:12):
different conferences that they couldas a patient advocate and I would
start to talk to different doctors.
And I've been so grateful to be ableto connect with a lot more doctors.
I've been to Washington DC twicenow for what they call Hill Day, to
try and help lobby for, you know,access of care and things like that.
So any doctor that I can speak to, I will.
(25:34):
But it's usually the ones thatare already in the realm of being
curious that I end up speaking to.
The ones that have no idea about it areusually the derm or the allergist or
someone that I have to go to becauseI need something and it's very hit
and miss, sadly, talking to them.
So it's been a mixed bag when itcomes to talking to professionals.
(25:58):
And if anyone listening would likemore information to look at it in a bit
more detail, do you have any pointersas to where the first port of call
might be useful for them to look at?
I usually always point peopleto www.itsan.org, I-T-S-A-N.org.
It is our non-profit for this condition.
It is based in the States, but theinformation can be used anywhere.
(26:22):
They have so much on thewebsite as much as they can.
Like any new research and thingslike that, what to look for.
Especially if you're someone that's beenusing topical steroids for years, and
you've had potency building up higher andhigher, you know, they just are trying
to showcase what the problem is and whatthey're trying to do to solve the problem.
(26:45):
So that's probably the first placeand then I have my documentary.
It's more just to help maybethat patient feel less alone.
If they do feel that they'regoing through it or they are going
through it or their family ishaving to watch them go through it.
It has just different stories frompatients all around the world and a
(27:05):
few doctors who talk on the topic.
Where can that be seen?
It's on my YouTube channeljust under, Briana Banos.
It's called 'Preventable: Protecting Our Largest Organ'. (27:15):
undefined
I love the ITSAN website.
It's so reasonable.
It's so informed.
It's balanced.
It's fair.
But there's another website that I'venoticed, I think you brought this to my
attention, Briana, called 'Scratch That'.
Which was started, I think,by five or six young people,
(27:39):
teenagers by the look of things.
It's a UK-based website, I think,and they've got, again, vast
amounts of information there.
Stories and details of what thisis all about and if anything is
going to make your heart reallysad, it's going to their website.
And I'm hoping it's going tochange the way in which the medical
(28:01):
profession starts to look at thiscondition and we get engaged with
it, get involved in the research.
and take that forward.
Are you aware of any usefulresearch being done at all, Briana?
Yes, I will say with 'ScratchThat', um, it was a few women in
their like mid-twenties, and I'vethankfully gotten to interview two
of them for my future documentary.
(28:22):
They've tried to gather asmuch research as they can.
I know they did the big push for, Ibelieve it's your Yellow Card, to try
and get people to put in that theyhad symptoms and things happening.
So, again, grassroots.
You know, people aretrying to get it out there.
I believe there's possiblysomething happening in the UK.
(28:44):
Like I know NES, I don't thinkthey're doing anything specifically
for TSW, but I know that they'retrying to raise more awareness
with how to use topical steroids.
With colour coding fordifferent strengths.
Correct.
And then in the States, I'm actually partof a study that is still in the process.
There's no funding going intofiguring this out, but we were lucky
(29:08):
enough to catch the curiosity ofone doctor and the study is ongoing.
We're still trying to gather theinformation that they need, but I'm
hoping it looks really promising.
They're trying to look ateverything from all angles.
So I'm hoping that somethingdoes come out of it.
You just, you never know.
(29:29):
If I was in the world of dermatologytoday, as a young doctor, I have
to say, I would embrace this.
This would be one of the most fascinatingareas of research to get involved in.
We don't understand itand it needs an answer.
So Briana, having gone through theamazing journey that you've gone through;
to anyone who is in your shoes, do youhave any practical tips or advice from
(29:52):
all the experience you've now got?
So I think the biggest thingemotionally is you're valid.
You are seen.
You are going through,what you are going through.
If a doctor says otherwise, knowthat you are not alone in that.
There's a community behind you.
If you haven't joined a forum or ifyou don't have, you know, the Instagram
(30:16):
community or the TikTok community,I highly recommend going there.
It's nice to lean on other peoplewho know what you're going through.
It's very important.
I know some people go totherapy to help with this.
This is a traumatic experience.
It is something that even when youare healed, and that will come, it
(30:37):
can last emotionally longer than thephysical process of going through it.
So please be aware of those things.
Try and have support aroundyou with family and friends.
Lean on them and don'tcompare yourself to others.
Everyone's journey is different.
(30:58):
When we start setting goals and startsetting expectations of when I'm
going to be healed, the disappointmentstarts to set in and that's when
the real depression and anxietystarts to fall on your shoulders.
Cause you know, my timeline isgoing to be different than yours.
I'm a veteran, you know,having to go through it.
So I would say take it day by day.
(31:18):
Don't compare yourself to others.
And then physically, things that havehelped so many people are if you can get
into the bath, you know, dead sea salts.
Fans, a fan is your friend,especially with not being able
to regulate your temperature.
I know when it came to oozing, Iwould use things like Viscopaste
(31:39):
bandages, things like that.
I know that there are differentbeddings and things like silk or, you
know, things that may not stick toyour face as much as something else.
Just try and keep ashealthy as you can be.
Don't eat a lot of junk if you can.
Just try and help yourbody as much as you can.
(32:00):
Drink a lot of water,eat a lot of protein.
I believe that there was a studythat showed people who are burn
victims, are usually given ahigher protein diet to help with
their healing, like wound healing.
And we're kind of in the sameboat, so that may just help some.
So it's just things like that.
And not to beat yourself up.
(32:22):
One day you might be doingwell and the next you may not.
And you'll sit there and, you know,try and figure out what it was that
triggered you, and it may not havebeen anything that you could stop.
So just be gentle.
There isn't a, there isn't a HolyGrail of an answer yet, is there?
So even though you might be going toa doctor who acknowledges and empowers
(32:43):
your position and supports you, they'renot then going to be able to say
"take this and it will get better".
We haven't got that answer yet.
What we do know is that you justcannot afford to put topical steroids
on that skin again, probably ever.
And it will take a long time.
(33:04):
And we're talking if you'relucky months, but probably years.
And years of it remainingunstable and unpredictable
Up and down, yeah.
Healing is not a linear journey.
No, well that's really helpful.
Thank you very much indeed.
Briana, I can't thank you enoughfor coming along to speak with
(33:27):
us today, and for sharing suchpersonal and important experiences.
It's an absolute eye-opener.
So grateful to you and I thinkour listeners will equally
share my gratitude there.
Let's hope in the near future we mightsee a more informed and more empathetic
medical profession helping our patientswith this dreadful condition and I'd love
(33:50):
to see some more research going on there.
So thank you very much indeed.
No, thank you.
Absolutely.
I just second everything.
It's been an inspiring anda humbling talk, you know,
reflecting on our profession.
But it's with people like you Brianathat, can help take us forward.
So, so thank you.
Well, I think that's an appropriateplace to bring this particular
(34:11):
episode to a close, George.
So, I do hope that people listeninghave found it interesting and helpful.
If you do enjoy these podcasts, then dorate and review us, because it really
does help us in putting them together.
And we'd love to hear your feedback.
We'd also like to thank our sponsor,AproDerm®, for all their help in putting
these Skin Deep podcasts together.
(34:31):
We couldn't have done it without them.
So, until the next time,it's goodbye from George.
Goodbye.
And it's goodbye from me.
Goodbye.
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